Recruiting

Observational Study

Sponsor:

PKD Foundation

Code:

NCT04039061

Conditions

Polycystic Kidney Diseases

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Study Details

Brief summary:

The purpose of the ADPKD Registry is to create an online patient network that includes at least 5,000 people with Autosomal Dominant Polycystic Kidney Disease (ADPKD) who contribute data on their health and other topics. The ADPKD Patient Registry aims to support important scientific discoveries and support patient needs in the following ways:

  • Connect ADPKD patients with opportunities to join clinical studies.
  • Collect data for the research community to better describe the ADPKD disease experience and improve patient care.
  • Engage with patients by measuring quality of life outcomes.

Conditions

Polycystic Kidney Diseases

Study ID

NCT04039061

Start date

Sep 4, 2019

Status verified date

Sep, 2026

Completion date

Sep 4, 2029

Anticipated

Primary completion date

Sep 4, 2029

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Inclusion Criteria:

  • Diagnosis or suspected diagnosis with autosomal dominant polycystic kidney disease (ADPKD)

Exclusion Criteria:

  • caretakers, family members or friends of individuals with ADPKD

Study Design

Enrollment

3000 participants

Anticipated

Interventions and Outcome Measures

Arms

ADPKD patients

Patients with a diagnosis, or suspected diagnosis, of ADPKD

Primary outcome measure

  • Number of people with polycystic kidney disease who experience health-related quality-of-life changes [ Time Frame: 1 year ]

Central Contacts and Locations

Central contacts

Chris Chen, PhD

816-268-8472chrisc@pkdcure.org

Vanessa Westerfield, MPH

registry@pkdcure.org

Locations

PKD Foundation

Recruiting

Kansas City, Missouri, United States, 64131

Contacts

Chris Chen, PhD

816-268-8472registry@pkdcure.org

More Information

Sponsor

PKD Foundation

Last update posted

Sep 22, 2026

Last verified

Sep, 2026

Trial information was received from ClinicalTrials.gov and was last updated on 2026-10-23. This information was provided to ClinicalTrials.gov by PKD Foundation on 2026-09-22. Recruitment status is synced daily from ClinicalTrials.gov and may not reflect the sponsor's current status. Confirm during your call.